Monday, August 13, 2012

My Favorite Moments from the Minnesota Fragile X Picnic




Our second picnic went so well! I really feel like we are getting a cohesive group together in Minnesota. It's very exciting to see people come together and feel such a close bond, almost right away. And there's so many more of us than I thought, back when the twins were first diagnosed. I think I went a year after our diagnosis, before I saw another child with Fragile X.

It doesn't feel as rare, anymore. When I meet new people and have to explain the boys, I tend to say they have "Fragile X Syndrome?" I say it in a questioning tone, because I expect that the person I'm telling won't have heard of it. Well, I decided this weekend, I'm not going to do that anymore. I'm going to say "They have Fragile X," matter of fact, as if it were as common as autism and I expect everyone to be aware of it. We aren't as few and far between as we used to be.

Mother Nature decided to grace us with a gorgeous day on Saturday. We couldn't have hoped for more.

Here are some of my favorite moments from this year's picnic:

  • When Mary discovered her son Dan was featured in the NFXF Annual Report - the Annual Report that probably went out to hundreds of people, and she had no idea they featured a little paragraph and photo of her son.

  • When Tammy, mother of four children with Fragile X, met Sue, mother of two sons with Fragile X, and realized that Sue was the very first person she talked to, fifteen years ago, when Tammy's first son was diagnosed with Fragile X.
  • Introducing Desirae Rambeck, from the Minnesota Fragile X Clinic, to the group and then seeing everyone have a chance to talk to her personally.
  • The huge laugh we had when I tried to talk Tammy into borrowing a book, and she absolutely refused because the last time she borrowed a book from someone, her son ate a page out of it.

  • When a bunch of the kids were fascinated, predictably, by the water spout.

  • When AJ started waving the bubble wand around in the air to make bubbles, deliberately, for the first time in his life.

I love this group.  I went home exhausted but thrilled that it had gone so well.

No comments:

Related Posts with Thumbnails

Labels

#youmightbeanautismparentif (1) 2012 in review (1) 9/11 memories (1) ABA therapy (8) Acceptance (5) acronyms (1) advocacy (1) affection (1) aggression (8) AJ (11) Aliza (20) Aliza the playwright (1) All I really need to know... (1) Alphabitty Moments (1) American Girl (2) Ann Coulter (1) antibullying (1) anxiety (17) anxiety in parents of children with special needs (2) apple orchard (2) apps for autism (1) AppSmitten (1) Arbaclofen (13) Arbitrary Thoughts (1) ARC (1) autism (25) autism brushing (2) autism portrayed in TV shows (1) Autism Shines (1) awareness (15) backyard (1) baseball (2) bath toys (1) beds (1) behavior problems (4) being tall (1) Birthday Boys (3) biting (4) blog change (1) blog hop (2) blogging (3) books (8) bottles (12) brushing (3) bubbles (3) Burnsville Fire Muster (4) bus (1) Cabin Fever in Minnesota (1) candy (2) Carly Fleischmann (4) Carly's Voice (1) cats (1) cats and dogs (1) chewys (2) Chicago (8) childcare for special needs children (4) childhood (1) Children's Museum (1) chocolate (1) Christmas (8) Church (4) circumin (1) clinical trials (1) Clonidine (2) CNN Hero of 2011 (1) coffee (1) communication (1) comparisons (1) computer (1) Conference (5) cost of special education (2) Courage Center (1) Curcumin (1) daddy (1) dance (5) dance competition (2) dance moms (2) Dental surgery (1) dentist (2) developmental milestones (1) diagnosis (3) diapers (2) Diego (2) Disability Day (2) dogs (1) Dolphin Tale (1) Doomsday Preparation (1) Dora (6) Doritos (2) drug trials (1) DVD player (1) early intervention (1) earrings (1) Easter (1) ECSE Parent Retreat (1) electronic gadgets (1) electronics (1) Everything I need to know... (1) Evil Overlord (1) fall (3) falling asleep at school (1) families (1) family (6) fashion (1) fear (1) Featured (5) Feel Good Friday (10) field trip (1) fireworks (1) first day of school (4) Flash Gordon (1) Food Chronicles (2) food issues in Fragile X and autistic children (3) forms (1) forts (1) Fragile Face of God (1) Fragile X (28) Fragile X advocate (1) Fragile X and autism (1) Fragile X Awareness Day (1) Fragile X carriers (2) Fragile X in the news (2) Fragile X presentation (1) Fragile X statistics (2) Fragile X Writers (14) friends (5) fundraiser for Fragile X (1) funniest (14) Gabrielle Giffords (1) Galveston (3) games (1) getting carsick (1) Girls' Night Out (1) Giving Spirit (1) glasses (1) global warming (1) going home (1) Good Morning (1) Great Quotes (2) guest blogs (3) guest post (2) haircuts (3) Halloween (2) hearing test (1) Heaven is for Real (1) hippotherapy (2) holidays (5) Holland (4) Holly (3) home life (1) homework (3) hotel (1) hugging (3) hyperactivity (2) IEP Meeting (2) IEPs (1) in the news (4) inclusion (2) inspiration (3) integration (1) iPad (4) iPad apps (2) iPad apps for autism (3) IQ testing (4) Jack Jablonski (2) January First (1) Joke (1) journal entry (1) kids with Fragile X and animals (1) Kindergarten (6) Kindle (1) kisses (1) language study (3) learning to talk (5) leaves (1) lemonade stand (1) Lily (1) Little Einsteins (1) losing teeth (1) Mad Gab (1) makeup (1) mall (1) Mall of America (2) marcia braden (1) McDonalds (1) media sensationalization (2) medications (10) Melatonin (1) Miami (1) MIND Institute (2) Minnesota Bloggers Conference (2) minocycline (1) Miracle League (3) monkeys (1) mosquito bites (1) Mother's Day (1) movies (3) MVMOM Used Clothing and Equipment Sale (1) nail trimming (1) names (1) naughtiness (1) neighbors (1) nicknames (1) nightmares (1) normal (1) off topic (9) one thing leads to another (1) Operation Beautiful (1) oral sensory (2) orphan drug act (1) other bloggers (2) Our Wedding (2) outside (2) overstimulation (3) panic attacks (1) parade (3) parental stress (1) Parenthood (1) park (7) Partners in Policymaking (6) penicillin (1) people with disabilities (5) pets (1) pharmacy fun (1) photography (1) Photoshop (1) picnic (1) Pictures (3) pinching (2) pink shirt (4) Pinterest (1) playing outside (7) playing with toys (7) poem (1) politics (2) poop (4) potty training (10) Presents (2) protecting autistic children (2) rash (1) reading to kids (1) research (15) Retreat (1) riding a bike (2) Roger Ebert (1) routine (1) RSS feed (1) RUSH University (1) San Diego (1) Sandy Hook Elementary (1) Santa (3) schedules (2) school (37) school bus (2) school notes (1) school pictures (2) screaming (2) self image (2) self-checkouts (1) sensory (21) Seroquel (1) siblings with developmental delays (2) sick kids (6) sippy cups (11) sleep (5) smile (1) snow pictures (5) Snowstorm (3) social situations (7) speaking of the unspeakable (1) special education (2) special education evaluation (1) special needs kids (1) special needs parents (2) Special Needs Ryan Gosling (6) Special Olympics (1) spelling (2) spoon feeding (2) spring break (3) staying positive (2) stimming (4) Strep (1) STX209 (27) Stylish Blog Award (1) summer (7) Sunday School (1) Sundays (1) sunshine (1) survival mode (1) swimming (9) talking (13) talking to kindergarteners (2) Target (2) teacher's aides (1) Teeth brushing (1) Tegretol (1) Temple Grandin (9) Ten Commandments (1) textbook case of Fragile X (1) thankful (1) thanksgiving (2) that window/mirror thing (1) The Autism Store (1) The R Word (3) the rapid passage of time (1) The Right Things to say to parents of special needs children (1) The Santa Experience (3) the Shedd Aquarium (1) The Twin Thing (8) The Wiggles (2) therapeutic horseback riding (2) therapy (12) This is Autism (1) topless (1) trampoline (2) traveling with special needs children (12) TV (1) twins with special needs (3) Twitter (2) typical Fragile X characteristics (2) typical kids (1) typing (1) vacation (3) Vacation Bible School (2) video games (1) videos (8) volunteering (1) Waisman Center (4) water play (3) way-back-Wednesday (1) What I've Learned (1) What's your song? (1) when a special needs parent dies (1) Wiggles (4) Wii games (1) Winner Winner Chicken Dinner (1) winter (2) wonder (1) Wonder Pets (1) Wordful Wednesday (1) Wordless Wednesday (6) Words of Wisdom (1) World Autism Awareness Day (1) YMCA (2) You Tube (2) Zack (22) Zoloft (1) zoo animals (2)